When Ethan had his cardiac cathertization in May the cardiologists in Los Angeles told us that he would need to have the single ventricle repair. They said that although a full repair was possible their would be higher risk of brain damage and future operations down the road in addition to the unknown function of his mitral valve. We were again saddened as our hopes were high that he would be able to have a fully functioning heart. We understood that the single ventricle repair would be best for Ethan and had come to terms with the decision made by the doctor's in L.A.
Prior to hearing the news from L.A. we had our cardiologist in San Diego forward Ethan's images, test results, echo, cath, etc to Children Boston's. For those of you that are unfamiliar, Children's Boston is the #1 hospital in the country in regards to pediatric cardiology (don't get me wrong L.A. is #11 which is still very high) and they are literally cutting edge when it comes to HLHS babies. They are even doing in utero procedures to balloon the left side of the heart! Anyways, we heard from the cardiologist/surgeon there, Dr. Wayne Torestky and Dr. Pedro Del Nido, and they believe that the best long term option for Ethan was to do the whole heart repair!
Again we were given hope but had so many questions. Why didn't L.A. feel the same way? Would insurance pay for his operation away if we decided on Boston? What would his quality of life be?
First call I made was to our insurance company. We have a high deductible plan through Kaiser and they indicated that they would not pay for Ethan's surgery in Boston and the only time they would pay for a hospital that is not contracted through them would be in an emergency circumstance.
We then met with the surgeon in L.A. July 13th. He indicated that he felt that Children's Boston was giving us false hope and not disclosing what the full heart repair would entail and the risks associated with it. He feels that depending on the size of Ethan's ascending aorta that he may not even be a candidate for the operation and that we would make a trip out there for nothing. He told us that he would order an echo cardiogram and if the measurements were 8mm or more (should be 8.5-9mm) then he would attempt to do the full heart repair but it would also be dependent on how things look when he goes in. He let us know that either way there would be more surgeries down the road and that he was more in favor of the single ventricle repair as it would be more "predictable". We had the echo cardiogram last Monday, the 16th, and Ethan's cardiologist was extremely optimistic he said that he was getting a measurement of about 7.5-8mm and he felt the whole heart repair would be the best option.
On Thursday I finally heard again from the surgeon in L.A. He felt that our cardiologist was overly optimistic and that he was getting measurements between 6-7mm. He said that he didn't want to give us hope and that he was 75% sure that he would be performing the Norwood/Glenn hybrid procedure, but he wouldn't know for sure until he opens Ethan's up and measures the pressures and sees the anatomy of his heart.
Either way we are at a fork in the road and there is no going back. Do we continue to pursue Boston even though it would not be covered by insurance and put us in the poor house? What if we do and it is all in vain and Ethan has the single ventricle repair anyway? Do we trust that the surgeon in L.A. will make every attempt to do the whole heart repair? Many people have asked why they don't just try the whole heart repair and if it doesn't work as expected then do the single ventricle repair. I have asked the doctor's this very question and they have told us that once they pick one road there is no going back at this point. We are truly faced with the most difficult decision of our lives, of Ethan's life. Prayers for Ethan, for the surgeon, and for us are greatly appreciated along with support, advice and a friendly comment.
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